Conquering Sjogren’s: Follow us on our journey to change the face of Sjogren’s

Celebrating 35 Years!

Posted on Wed, Sep 19, 2018

Elaine September marks the 35th Anniversary of the Sjögren’s Syndrome Foundation (SSF) that was founded by Elaine K. Harris, a frustrated patient determined to learn more about her disease. During the SSF’s first year, Elaine held support group meetings in her home and wrote The Moisture Seekers, the Foundation’s patient newsletter, on her typewriter.  She then slowly grew that support group into the SSF.

Today, in her 90s, Elaine still remains an important force in the eyes of the SSF.  Her mantra of "founded by a patient, for patients” remains the center of what we do. While the Foundation has always been a patient focused organization, it has grown from a “Mom & Pop” operation that was started 35 years ago into an internationally recognized organization shaping the industry in terms of research, education, patient care, advocacy and new therapies.

Elaine NYC

The SSF staff and our hundreds of volunteers, work hard to ensure that the patient voice is never lost in our discussions nor plans. And our accomplishments speak volumes for how we are changing Sjögren’s for our patients. We are working diligently on the development of new therapeutics to treat Sjögren’s and have published the first-ever Clinical Practice Guidelines in Sjögren’s! These guidelines are starting to provide a roadmap for physicians and dentists to use when treating their patients.

And probably one of the biggest accomplishments in the past 5 years, is the SSF’s achievement of our 5-Year Breakthrough Goal – to reduce the time to diagnose Sjögren’s by 50%!  When we set that goal in 2012, it took nearly 6 years to receive a proper diagnosis, and we are proud to say that, in 2017, we were able to announce that we exceeded our goal and have reduced that time to 2.8 years!

Elaine Harris Sjögren’s is finally receiving the recognition and appreciation it deserves. Although not to the level we need it to be, we are seeing more and more physicians step up to learn about Sjögren’s, while more and more families of patients are starting to get involved with the SSF. 

We are also seeing more interest from pharmaceutical companies than ever before, all interested in helping us to find a new treatment to help our patients!  A treatment that will help fight the entire disease, not just one symptom.

Happy Anniversary SSF and here is to another 35 years!

Steve and Elaine

 

 

Support the vision that Elaine K. Harris  had 35 years ago and all Sjögren’s patients by  becoming an SSF member!

Help us celebrate 35 years of helping all Sjögren’s patients!

Topics: #ThisIsSjögrens, Sjögren’s, Advocacy

Celebrating our Future!

Posted on Wed, Aug 01, 2018

Celebrating the future of the SSF!

SSF This Is Sjogren'sThis past July 23rd, the Sjögren's Syndrome Foundation (SSF) joined with organizations around the world to celebrate the 8th annual World Sjögren's Day and what would have been Dr. Sjögren's 119th birthday. World Sjögren's Day commemorates the birthday of Henrik Sjögren, the ophthalmologist who first discovered the disease in 1933, which has helped all patients find answers to their health questions.

More importantly, celebrating this day allows us to reflect back on the incredible advancements recently made in Sjögren's and look to the future at all the work that still lies ahead.

With millions of patients suffering around the world, Sjögren's is one of the most prevalent autoimmune diseases but it is not a “cookie cutter” disease and affects patients differently. The complexity of Sjögren’s can be seen in the various types of treatments and care needed for patients.  Its complexity is also seen in the progress the SSF still needs to make.

Every day the SSF strives to represent your voice and provide hope to patients and their families through our many initiatives.  Every program and project is evaluated with the patient in mind, which is why we want to hear from you!

Let your voice be heard!

In honor of this past World Sjögren’s Day, we encourage you to share with us your views of the SSF and how you envision the future. Let your voice be heard and comment below with your thoughts on the following SSF questionnaire.


Questionnaire:

Celebrating the future of the SSF and hope for Sjögren’s

(Please share your answers below or email them to tms@sjogrens.org)  

  • What SSF resource(s) are you the most thankful for:
  • What are the three most important focuses of the SSF:
  • In the next five years, how do you envision your future (or that of a loved one) living with the disease:
  • What are your hopes for the future of Sjögren’s for the next generation:

faces all

Take Control of Your Health!  Receive our Newsletter by Becoming an SSF Member

Topics: World Sjogren's Day, #ThisIsSjögrens, Advocacy, Sjögren’s

April is Sjögren's Awareness Month!

Posted on Sun, Apr 01, 2018

30 Faces for Sjögren's Awareness Month!

With an estimated 4 million Americans suffering from Sjögren’s, both men and women of different ages and ethnicities, it is one of the most prevalent but lesser known autoimmune diseases. Sjögren’s is also not a “cookie cutter” disease and affects patients differently. This can lead to a misunderstanding about the seriousness of the disease and be extremely isolating for those living with it. 

Apriil SSF 2017

April is Sjögren's Awareness Month and using our 2018 campaign, “30 Faces for Sjögren’s Awareness Month,” we hope to help others visualize the vast impact of the disease.  Every day in April, we will be using one or more of our social media channels to educate people about Sjögren’s.

We encourage you to use April Awareness Month and our #ThisIsSjögrens social media campaign, as a way to talk about Sjögren’s. Every post is an opportunity to start a conversation about living with Sjögren’s and how it affects you. The more others understand, the more support you can find. And know that we at the Sjögren’s Syndrome Foundation are here for you!

Get Involved!

On behalf of the millions of patients living with Sjögren's, thank you for your support of the SSF and our mission. Together we are transforming the future of Sjögren's for all patients!

Click here to view our daily  April Awareness campaign on Facebook!
 

 this is sjogrens - 2018

Sjögren’s (“SHOW-grins”) is a systemic autoimmune disease that affects the entire body. Along with symptoms of extensive dryness, other serious complications include profound fatigue, chronic pain, major organ involvement, neuropathies, and lymphomas.

Topics: Sjögren’s, Advocacy, April Awareness Month, #ThisIsSjögrens

30 Faces for Sjögren’s Awareness Month 

Posted on Fri, Mar 16, 2018

AprilisSjogrensAwarenessMonth.jpg

30 Faces for Sjögren’s Awareness Month

#ThisIsSjögrens
 

With an estimated 4 million Americans living with Sjögren’s, it is one of the most prevalent but lesser known autoimmune diseases. This can lead to a misunderstanding about the seriousness of the disease and be extremely isolating for those living with it. 

April is Sjögren's Awareness Month and we hope you will join us in educating the public about this complex and debilitating disease. With our 2018 campaign, “30 Faces for Sjögren’s Awareness Month,” we hope to help others visualize the vast impact of the disease. Using the #ThisIsSjögrens hashtag, the SSF will highlight 30 people’s photos, along with a fact about how the disease affects his/her life.

Every day in April, the Foundation will post a different photo of someone who is living with Sjögren's or touched by the disease (you can be a patient, family member, friend, physician, researcher etc.). Along with the photo, we will include one fact from their #ThisIsSjögrens Questionnaire on our social media pages.

The 30 daily posts will each give one small glimpse into the disease, and by the end of April, we hope the collection of posts will show the seriousness and complexity of Sjögren’s.

Let Your Voice Be Heard!

SSF This Is Sjogren's.png

If you would like to submit your story as one of our “30 Faces for April Awareness Campaign” please email us your answers from the questionnaire below, and a picture of yourself, to tms@sjogrens.org with the subject line: “April Awareness Month 2018.”

Thank you for your support. Together we will make Sjögren’s a household name!


#ThisIsSjögrens Questionnaire
(Please email your answers and a picture of yourself to tms@sjogrens.org.) 

Name (The Foundation will only publish first names):

Email: 

Current age: 

Age when diagnosed (or What is your connection to the disease):

City/State:

How would you describe yourself in one word (teacher, graphic designer, stay at home parent): 

What are your top three most difficult symptoms to live with:

What do you wish people knew about your Sjögren’s: 

What’s your best Sjögren’s tip: 

Don’t forget to include a picture of yourself!

 

Topics: Sjögren’s, #ThisIsSjögrens, April Awareness Month, Advocacy

Give the Gift of Hope!

Posted on Fri, Dec 29, 2017

give the gift of hope BANNER.jpg

We at the Sjögren's Syndrome Foundation (SSF) are extremely proud of all that was accomplished in this past year and it is because of your generous support that we are able to achieve these accomplishments. Join us and take great pride in knowing that your support plays a vital part in making a difference in the fight against Sjögren's and provides hope to those living with this disease. 

The SSF strives every day to provide hope to patients and their families through our many initiatives. Hope moves us forward and helps transport us to a more promising place. A place where Sjögren’s becomes a household name, where physicians and healthcare providers know about Sjögren’s, and where there are treatments available for this devastating and life-altering disease.

As we approach the end of the year and more importantly, the season of hope, we reflect on what was a dynamic year in Sjögren’s and envision the many advancements and achievements that still lie ahead. We hope you will consider donating today and your tax-deductible year-end gift will help the SSF as we continue our work in the new year. 

Thank you for believing in us and our mission. Together we will conquer Sjögren’s and transform the future of the disease, giving hope to all patients!

Make a Donation Now

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We encourage you to share this with family and friends so they too can help by having the opportunity to support the SSF. Thank you!

Topics: #ThisIsSjögrens, Advocacy, 50in5: Breakthrough Goal, April Awareness Month

RESEARCH UPDATE: New Breakthrough from SSF Grantees

Posted on Thu, Sep 07, 2017

 "Findings yield new clues to puzzling autoimmune disease"

OMRF.jpgOklahoma Medical Research Foundation (OMRF) scientist and former SSF research grant recipient, Kathy Sivils, Ph.D., and her colleagues have identified a strong association between a variant in a gene called OAS1 and susceptibility to Sjögren’s. This variant may provide valuable insight into the genetic basis of Sjögren’s, as well as other autoimmune conditions with similar triggers.

This research was completed by the Sjögren’s Genetics Network (SGENE) that consists of an international coalition of researchers led by scientists at OMRF, including two former SSF Research Grantees: Dr. Kathy Sivils and Dr. Christopher Lessard.

“There was very little evidence for a connection to autoimmune disease prior to our study. Firmly establishing this new association with Sjögren’s then led us to look at the gene’s function in more detail,” said OMRF scientist, co-leader of the project and former SSF research grant recipient, Christopher Lessard, Ph.D.

“If we can get out ahead of the disease, it might help lessen the severe damage that can occur in salivary glands and other organs,” Dr. Sivils said. “Early diagnosis and proper treatment are crucial, and discoveries like this one may give researchers and healthcare professionals more to work with as they look for clues to this perplexing disease.”

Although this is only one step in unlocking the mystery of Sjögren’s, this breakthrough gives hope for future researchers to investigate causes, progressions, and treatments at the disease’s genetic level.

“On behalf of Sjögren’s patients, the Sjögren’s Syndrome Foundation (SSF) applauds OMRF for its commitment to finding the many unanswered questions about the disease,” said SSF CEO Steven Taylor. “Drs. Sivils and Lessard, along with their OMRF colleagues, continue to leave their mark in advancing Sjögren’s research, and patients worldwide will benefit from their hard work.”

It’s because of your generous support that the SSF is able to award grants to talented investigators, like Dr. Sivils and Dr. Lessard, who bring novel approaches to Sjögren’s research. The SSF is currently focused on many research initiatives including: Research Grants, Clinical Practice GuidelinesClinical Trials Consortium and our 5-Year Breakthrough GoalWe hope you will consider donating to the SSF Research Program and help us transform the future of Sjögren’s for all patients and their families. 

Click here to read the full press release from OMRF

Donate to Research

Topics: Research, Sjogren's, Advocacy

World Sjögren's Day 2017

Posted on Sat, Jul 01, 2017

World Sjögren's Day commemorates the birthday of Henrik Sjögren, the Swedish ophthalmologist who first identified the disease in 1933 and has helped all patients find answers to their health questions. This year, the SSF will join with other organizations around the world to celebrate recent advancements made in Sjögren's this past year and raise awareness of the disease in honor of Dr. Sjögren.

World Sjögren's Day helps put a face on the millions of people who live with this disease or suffer from symptoms and have yet to be diagnosed. It gives everyone touched by Sjögren's a vehicle to reach out and educate those close to them - family, friends, co-workers, neighbors, etc. - about the disease. 

We encourage you to use this opportunity to let your voice heard and talk about Sjögren’s with the people in your life. By sharing your story and educating others, you are helping to form the message that Sjögren's is a serious disease that deserves to be recognized. You may also be helping someone who is looking for answers to their problems.

How Can You Get Involved:

This is Sjo Collage 2.jpg

What is Sjögren’s?

Sjögren’s (“SHOW-grins”) is a systemic autoimmune disease that affects the entire body. Along with symptoms of extensive dryness, other serious complications include profound fatigue, chronic pain, major organ involvement, neuropathies and lymphomas.

Today, as many as four million Americans are living with this disease and nine out of ten patients are women with an average age of onset in the late 40’s. However, Sjögren’s can occur in all age groups, even in children.

Make a Donation Now


UPDATE:

World Sjögren’s Day Raises over $8,000!

Thank you to everyone who shared their story and donated in honor of World Sjögren’s Day, which was created to commemorate the birthday of Dr. Henrik Sjögren! Together, we not only increased awareness of this debilitating disease but also raised over $8,000 for Sjögren’s research and SSF patient programs!

Remember, even though the day has passed you can still donate in honor of Dr. Sjögren and all patients.  Click here to learn more.

Topics: World Sjogren's Day, #ThisIsSjögrens, Advocacy

What You Need to Know About Sjögren’s Clinical Trials

Posted on Tue, Jun 13, 2017

clinical trial.jpgClinical trials are a crucial element in medicine and health care to help develop drugs that will treat or possibly cure certain diseases. Researchers use clinical trials to test if a drug works, how well it works, how safe it is and how it compares to any currently available treatments.

Before a drug can be tested on human patients, it is tested for years in labs. Clinical trials are among the final steps of the drug development process. When drugs are brought to clinical trials, pharmaceutical companies must find enough patients to participate in the research in order to get solid results. The rarer the condition, the more difficult it can be to find the number of patients needed for a trial.

Considerations for Participating in a Clinical Trial

If you have been diagnosed with Sjögren’s and are thinking about participating in a clinical trial, there are several factors you should consider. You can learn about trials taking place in your area on the Sjögren’s Syndrome Foundation’s website by clicking here. When researching details of potential trials that might work for you, find out the risks and benefits of each trial, ask if there are any costs that you may be responsible for associated with participation, and most importantly, talk to your doctor about whether or not the trial is right for you.

One specific consideration for participating in a Sjögren’s study is your diagnosis. In some cases, the diagnostic criteria in the study protocol may be different than the criteria your doctor used in your diagnosis.

Clinical trials can help patients gain access to new drugs and expert medical care, while contributing to important medical research benefiting the larger community. However, patients should not enter a clinical trial without considering the risks and costs to themselves as well – the medication might not work, or might have unpleasant side effects; the time and travel to the study site, time for study visits and absences from work might be costly; and once the trial is complete, the treatment may still need to undergo months of approvals before you can have regular access to it. Additionally, as a patient in a clinical trial, you may receive a placebo drug or therapy instead of the new treatment being studied. Even if you are a patient receiving a placebo, you will still receive basic standard of care and medical oversight for your condition.

How do Clinical Trials Work?

Clinical trials vary greatly depending on the type of study and the treatment being tested. Each trial is usually funded, or sponsored, by a pharmaceutical company, academic research center, or federal agencies such as the National Institutes of Health (NIH). Studies take place across the U.S. and even globally, at hospitals, physician offices, clinics and more – one study might have researchers conducting the trial in many different locations.

Prior to enrolling, you should know how long the study is expected to last, where you will need to go and what you will need to do in order to participate, how your participation will be compensated for – or if you will be compensated for your participation and more. These questions can be answered during discussions with the doctor or staff running the study. If you are still interested in participating, the study staff will usually schedule a screening visit. The details of screening appointments varies from study to study, but all screening appointments are used to determine your eligibility for the trial. Depending on the therapy being studied, screening appointments might look to learn your medical history; run blood, urine or tissue samples; and learn what medications you are currently taking.

Following the screening, the team running the study will contact you to let you know if you qualify for the trial or not. If you do qualify, you will be scheduled for your first study visit, which will help establish the baseline of your participation in the study. Again, the specifics will vary in each trial, but the doctor might run tests or draw labs, as well as give you the drug being studied and instructions for dosing and any reporting you may need to do. This first visit will also give you a chance to schedule future visits.

Throughout the duration of the study, you will need to attend appointments at various intervals. Some studies require regular visits or even hospital stays, while others can be done less frequently. As a study progresses, you may need to be seen less frequently. At each visit, the doctor may re-run tests or labs to compare against the baseline. You also may be given more medication at each visit.

When the study comes to an end, you will need to turn in any unused medication and reporting documents. The doctor will perform tests, labs or procedures similar to what was done during your screening or baseline appointments to see if the drug has made an impact on your health. The doctor may be able to tell you what treatment you received during the study once the study is complete. Once the clinical trial is completed, you will need to revert to your previous physician, if different, and treatment schedule.

Deciding to join a clinical trial can be a difficult decision, but taking part can help researchers learn more about potential treatments for your condition. If you carefully consider the risks and rewards, and arm yourself with information before committing to a study, participating can be a very rewarding experience.

by Kristen Snipes, Project Director at Rho, a Clinical Research Organization

This information was first printed in The Moisture Seeker, SSF's patient  
newsletter for members. 

Click here to learn more about  Sjögren’s clinical trials

Topics: Advocacy, Clinical Trials, Treatment

April is Sjögren’s Awareness Month!

Posted on Sat, Apr 01, 2017

SSF This Is Sjogren's.pngApril is Sjögren’s Awareness Month! To portray the entire patient experience, in our This Is Sjögren’s Awareness Campaign, the Sjögren’s Syndrome Foundation (SSF) is drawing facts and figures from our recent “Living with Sjögren’s survey findings. This survey, which was conducted by Harris Poll on behalf of the SSF, gave the Foundation amazing data about how patients’ lives are affected by Sjögren’s, what symptoms and complications patients live with and how the disease affects their emotional and financial well-being. 

The independent nationwide survey, designed by Harris Poll along with the SSF and a volunteer committee of patients and healthcare providers, was mailed to Foundation members in the spring of 2016. Nearly 3,000 adults shared their experiences with the disease and its physical, financial and emotional effects on their lives.

With the support of our members, this survey was developed to help the SSF:

  • Educate regulatory agencies and pharmaceutical companies about a need for a therapeutic drug for Sjögren’s
  • Support the need for additional SSF Clinical Practice Guidelines (CPGs) for how to treat and manage Sjögren’s
  • Provide researchers with information about the variety and severity of experiences patients have with Sjögren’s
  • Create greater awareness of this disease among consumers and healthcare professionals

Every day the SSF is sharing a fact from these survey findings or other information about the disease on our social media accounts to show: This is Sjögren’s (#ThisIsSjögrens)! While the daily post give a small glimpse into Sjögren’s, by the end of April, we hope these 30 posts will show the complexity and seriousness of the disease. SSF_17114.03-4-2.png

How Can You Get Involved:

We encourage you to use April Awareness month and our #ThisIsSjögrens social media campaign, as a way to talk about Sjögren’s with your family and friends. Every post is an opportunity to start a conversation about living with Sjögren’s and how it affects you. The more others understand, the more support you can find. And know that we at the Sjögren’s Syndrome Foundation are here for you! We are committed to accelerating the development of better diagnostic, management and therapeutics that will have the greatest potential impact on improving the quality of life for Sjögren’s patients. Together, we will transform the future of Sjögren’s!

SSF This Is Sjogren's April 2017.jpg

Click here to view our daily  April Awareness campaign on Facebook!

 

Topics: April Awareness Month, Children with Sjogren's,, Men with Sjogren's,, coping with sjogren's, Advocacy, #ThisIsSjögrens

Sjögren's Awareness Month is Almost Here!

Posted on Mon, Mar 20, 2017


ATT00002.pngApril is Sjögren's Awareness Month and we hope you will join us in educating the public about this complex disease and how it affects those who are living with it.

Sjögren's is often described as an invisible illness because many of the disease’s debilitating symptoms cannot be physically seen. This can lead to a misunderstanding about the seriousness of the disease and be extremely isolating for those living with Sjögren's. 

This April, the SSF is going to build upon our This Is Sjögren’s campaign from last year! Our goal is to help others visualize the disease from a patient’s perspective, and close the gap between the reality of Sjögren’s and the perception that many non-patients have with Sjögren’s! 

To better portray the entire patient experience, in our #ThisIsSjögrens 2017 April Awareness campaign, the SSF will be drawing facts and figures from our recent national patient survey. This survey, which was conducted last year, has given the SSF amazing data about how our patients lives are affected by Sjögren’s, what symptoms and complications patients live with and how the disease affects their emotional and financial well-being!  

Each day, throughout April, the Foundation will post a different #ThisIsSjögrens factoid or patient phrase on social media – so stay tuned! And while the daily post will give a small glimpse into living with Sjögren’s, by the end of April, we hope these 30 posts will show the complexity and seriousness of the disease.

Let Your Voice Be Heard!

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As the voice of the SSF, we want to hear form you! Please comment below and share with us one phrase that represents what it’s like to live with Sjögren’s. Thank you for your support; together we will transform the future of Sjögren’s.                                             

Example: Sjögren’s means choosing a medication that will help with my fatigue and joint pain but knowing it will make my eyes drier and more painful. #ThisIsSjögrens!

Topics: April Awareness Month, Advocacy, coping with sjogren's

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